The Wrap up of 2019

In December of 2018, I wrote to my friend. I told her my goals for the upcoming year. My goals included writing articles and essays that are not about schizophrenia. Also to get my work in more mainstream magazines. I have written some of my reasons why I want to write about other issues outside of schizophrenia here before, and the most important reason is that I want to be known as a writer who happens to have schizophrenia and not someone with schizophrenia who happens to write.

Well, as the year comes to a close, I am happy to report that significant changes came about in my writing life in 2019. I broke into the Christian market, which is something I wanted to do for a long time. I ended up writing fifteen devotionals for a magazine called Grace and Strength. It is a devotional magazine for caregivers. I also have a feature story coming up in a spiritual magazine.

The other goals that I achieved this year are that I was able to break into the business and financial markets. I wrote for both The Financial Diet and Business Insider. I was assigned more articles in this market, so look for more work from me in this area in 2020. In these articles, I write about suburbia vs. urban living, life insurance, and the two upcoming pieces are about other financial products like credit cards and wills.

In 2019 I had essays come out in Glamour and Good Housekeeping about living with schizophrenia, so although I continue to write about living with my diagnosis, I am reaching mainstream audiences and adding new bylines to my resume.

I can’t tell you how much it means to my well-being to be productive and to accomplish things on an almost daily basis. I know I can’t keep the routine of other writers, or work five hours a day, or keep a fast-paced schedule. However, I am still meeting my goals. My goals don’t have to look the same as anyone else’s. Meeting them, though, is significant and essential to my self-esteem and my ability to participate in the activities others enjoy (like work).

Because it was so helpful and fruitful to write down and share my goals for 2019, I want to share a little about my plans for 2020. The biggest news right now is that I will join SARDAA (Schizophrenia and Related Disorders Alliance of America) as an advocate. Much of SARDAA’s work has to do with getting better treatment for people with schizophrenia and reclassifying schizophrenia from mental illness to a brain disorder. Because I am onboard with SARDAA’s philosophy and mission, you will see me switch my language from the use of mental illness to the use of neurological disorder, a brain disorder, or brain disease. SARDAA also stresses that schizophrenia is a spectrum disorder and that no two people experience the illness the same way.

In 2020 I intend to write about schizophrenia whenever the opportunity arises, but I plan to try and move away from my personal story and open my writing up to other experiences to include the very most vulnerable, those living in psychiatric facilities, in prison, and on the streets. I feel like those of us who have a voice and a platform need to work at pulling the people who are hardest hit by the brain disorder we live with up and helping them on the road to a more comfortable and rewarding life.

Lastly, I want to continue to broaden the topics I write about and also focus some energy on creative essays. Some of the themes I am working on are my childhood, my marriage, college, and life before schizophrenia ever entered the landscape of my mind.

I hope in 2020 those that want a clean slate and fresh start get one. I hope if you are like me and building on something from 2019, that your success is beyond your wildest dreams. Here is a toast to all of our hopes, our dreams, and our health.

 

 

A New Approach to Living with Schizophrenia

I haven’t written a blog in a while, and the fact that I haven’t makes me feel like I have so much to unpack and say. For example, one of my Facebook friends posted about her husband with a “mental illness” yesterday, and there were dozens of comments about how “horrible,” “awful,” “painful,” etc. mental illness is, and she received loads of sympathy.

I get it. Psychosis is hands down the worst and most terrifying thing I have experienced. I get it that there are things that I have to figure out or forego or do in a different way than other people. I get that listening to someone talk about things that you know are delusions is difficult. I get that distorted thinking, anger, or whatever symptom a person might be displaying is hard. Yes, I’ve been there, done that, and no, I don’t want the t-shirt.

The thing is, I don’t like reading how “awful” mental illness is when schizophrenia is a part of my identity. When I came out five years ago and told family and friends about my diagnosis, I completely owned it. I started writing this blog, I started writing for mainstream publications, and I can’t think of a way that I could have put myself more “out there” and what I tried to say more often than not is, “Look, I have this illness and this is what someone with this illness goes through, looks like, experiences, etc.” And the thing I tried to say over and over again, is “I’m not that much different from anyone else.”

I wrote about my marriage of over twenty years. I wrote about being a friend, a daughter, a social worker, traveling, being a sister, etc. I tried to tell people that outside of schizophrenia, I am an average person with hopes, dreams, and desires. But the thing is, I never got past or around or away from the fact that I have schizophrenia, and it is every bit as much a part of me as my eyes, my feet, and my hands.

Is schizophrenia hard? Is cancer hard? Is diabetes hard? Is any disease hard? YES. They are all hard, but we never make them part of someone’s identity. And that is what I need to learn and tell myself. Schizophrenia is an illness like any illness. It impacts me, Rebecca, every day of my life. I have it. I feel it. I have to make hundreds of choices in my daily life to keep it from ruining me, but it isn’t me just like cancer isn’t my mom or stepdad who both have it.

I need to stop accepting schizophrenia as an identity that I own. It isn’t an identity. It is a disease. There is something abnormal about my brain. The brain of someone with schizophrenia looks different than a healthy brain scanned by an MRI. If I was someone who lied frequently, you could say, I have a character fault, but schizophrenia isn’t that either. There is nothing wrong with my character. It is my brain and the way it functions that is faulty, just like cancer cells don’t respond the same way healthy cells do.

I don’t know who I’m writing this to, you or me, or all of us.

If you think mental illness is awful or horrible or sad, that’s fine. Those words are true of almost every disease. Please don’t use those words to define or say something about me, though. I’m not awful, horrible, or sad, and I’m telling the world that at the same time I am telling myself.

An Identity Beyond Schizophrenia

I started an internship as a grant writer today. As many of you know, I have tried to go back to work several times, but I have always failed in one way or another. I loved the work I did today, and I think I can make grant writing along with freelancing work into a career.

I think I have mentioned before that I don’t want to be known as a woman with schizophrenia who happens to write. I want to be known as a writer who happens to have schizophrenia.

Please let that sink in a minute, because it is one of the most important things to me.

I am not only interested in mental health (although it is my primary interest). I am also interested in finances, relationships, lifestyle, architecture, spirituality and religion, and many other topics.

With all that in mind, I hope you will read my latest post on Medium called Rethink Retirement. Even if you aren’t interested in finances, I hope you will support me branching out in my writing.  The link is here.

I have many other essays and articles in the works, and I will share some of them with you as they are published.

We are so much more than our diagnosis!

Schizophrenia: We Just Might Catch You When You Fall

I can name at least a dozen people with schizophrenia that are doing remarkable things. Three of the people I am thinking about have started non-profits to raise awareness or funds for the treatment of the illness. One woman started a business; one woman is an actor; one man is an incredible artist, screenwriter, and father. Of course, many people with schizophrenia write about their experiences as is evidenced, by the number of essays and memoirs on the topic (including one I wrote that I wish would disappear because I could write something so much better now).

Maybe, none of the things I wrote surprise you about people with schizophrenia. Perhaps, you have always known that people with the illness could live productive, creative, meaningful lives. What you might not be aware of is the network that exists between some people who have the disease. I belong to a group on Facebook started by one of the founders of the non-profit, Stigma Fighters, and everyone in the group has schizophrenia or schizoaffective disorder.

It might surprise you to know that occasionally one of the group members will experience suicidal ideation and other group members will call them on the phone, talk to them, make sure they are safe, schedule check-ins, and possibly call someone in their area to do a welfare check, or if all else fails, call the police.

Recently, I was talking to my psychiatrist about talking to other people with schizophrenia in the middle of the night because they were hearing voices, or considering harming themselves. My psychiatrist was as surprised by this as I am. And I am surprised that we, those of us with the illness, provide this level of critical care to one another because it seems alarming to me that people that are considered by so many people to be incompetent in one way or another are reaching out, stepping up, and possibly saving lives.

Why do we do this? We do it because there is a big hole in our mental health care system. Seriously, think about the fact that those people who belong to one of the most stigmatized and vulnerable groups in society, step up and care for each other because often there is no one else to do it. We don’t have enough hospital beds; we have areas in the country that don’t have a single psychiatrist (psychiatric deserts), and the police are not adequately trained to handle mental health crises even though they are frequently the first responders.

I wanted to write about this reality so that people would be aware when they think of the illness of schizophrenia that many of us who have the diagnosis care for those who might otherwise slip through the cracks. It’s a broken system, and we are trying to patch it together and be a safety net one crisis at a time.

A Little Less Bad News May Make All the Difference in Schizophrenia’s Impact

Yesterday I read a short piece in Psychology Today (June 2019) called, “A Trick of the Mind.” The article introduced the words, nocebo effect, and the more common placebo effect regarding an experiment conducted by Brad Turnwald, a doctoral student at Stanford University and the lead author on the study they reported on.

The article was about an experiment where they told people that they were either predisposed to obesity or that they had a gene that protected against it. They tested the groups by having them exercise before they were given the genetic information and after. The people who believed that they were predisposed to obesity had a decline in performance on the exercise test after being given the negative information and the people who thought they had protection against obesity performed better.

Most of us are familiar with the placebo effect because we have heard it used in medications studies where people are given a sugar pill and feel better based on their expectations and possibly hope. I had never heard of the opposite, nocebo effect, though. Meaning those who are given negative information/expectations do worse.

When I received the diagnosis of schizophrenia, the doctor said, “I have bad news for you.” For over a decade I had lived with the belief that I had bipolar disorder and no one had ever said that was bad news. I had episodes of psychosis, and when I would fully recover, I would go back into the working world. I traveled and had lots of friends. I hiked. I played racquetball, practiced yoga, and I lifted weights. I had many friends and sat on committees for the city and graduated from an intense year-long leadership program. I regularly took classes to increase my knowledge or for fun.

My life looks completely different now. I have developed an anxiety disorder. I have a lack of motivation (different from being lazy), I can’t seem to find a job that I can manage (I apply for work regularly). I have fewer friends and am involved in far fewer activities, and the activities I am involved in are almost always things I do alone, like take a walk or write in journals. I have lost the motivation to make and keep friends.

I wonder if my psychiatrist had told me, “You have schizophrenia, but it isn’t going to make a difference in the way you live your life,” if that would have made a difference? I wonder if celebrities came out and said, “I have schizophrenia or schizoaffective disorder,” if that would make a difference? I can count the role models who have schizophrenia and are relatively famous (and only famous inside the mental health community, not the general population) on one of my hands. I can’t count the number of times I had read these words from parents when their child received a diagnosis, “Every parents’ nightmare.” I can’t count the number of times I have read that the average life expectancy of someone with schizophrenia is over 28 years less than the general population. I can’t tell you how many times I have heard jokes, seen stereotypes in movies and portrayed on the nightly news. I can’t tell you the number of negative messages I have had to filter through my brain and soul since I received the “bad news.”

I wonder, I really do wonder if the way we presented schizophrenia wasn’t so dire if people’s outcomes would improve? The studies done on placebo and nocebo seem to suggest they would.